Small cell carcinoma of the bladder (SCCB): anyone else?

I’ll start by admitting that I’m going to try and give the full picture here, but some of the facts are a little confusing with my limited knowledge. My stepmom was originally diagnosed with bladder cancer and they operated and removed the mass immediately upon finding it. However after further testing they discovered that the cancer had spread to other areas and she was given the diagnosis of stage 4 small cell carcinoma and the cancer had metastasized in her bones. This is where my confusion comes from as traditionally small cell is in relation to the lungs and bladder but her diagnosis was less specific and we can’t definitively state that the small cell is specific to the bladder. If anyone has had a similar diagnosis and can provide insight or clarity it would be much appreciated.

Further, we were told that she had 10 months and the cancer would likely become resistant to chemo and that could happen as early as after 4-5 rounds of chemo. However, she was at her lowest health wise before starting chemo and during the first two rounds. After several rounds of chemo she is doing incredible, she’s able to get around, cook, clean, go shopping on her own, etc. Months prior she was hardly about to get out of bed, so it’s hard to believe she is terminal and that time is running out.

My questions are, is it possible that there is more hope than we had with the original prognosis? Are there people with similar diagnoses that beat the system? Second, outside of the standard treatments of chemo is there any more we can do to extend these highlights and good moments for her?

Thank you for taking the time to read and providing any suggestions or feedback or clarity you may have.

Hello @serenalux and welcome to Mayo Clinic Connect. First, let me say I am sorry to read that your mom and you are going through this. By the sounds of your explanation of her journey, I get a sense that you are not sure if what she was originally told for her prognosis is accurate, especially given that she seems to be reacting quite differently than you were prepped for.

Has she, or have you, considered getting a second opinion as an option?

It is something that my dad and I have considered but she is hesitant to reach out to any other doctors in her area.
Is it possible to set up a virtual appointment with doctors at the Mayo as she holds this as the standard for best care in the industry.
(She has been a nurse for over 30 years)

Hi!

My mom was diagnosed with Small Cell Carcinoma invasive high grade neuroendocrine carcinoma in her bladder on 10/24/22. On 11/07/22 the tumor was removed from her bladder. She met with a team of Oncology Doctors at Chapel Hill (North Carolina) who want to treat with Chemotherapy and then removal of her bladder. She would like to keep her bladder and is looking for any treatment or trials that would allow that.

She is a 70 years old female in good health and no outstanding medical issues. Non smoker and am very active i.e. walking, exercise class, biking and dancing.

I have a few questions:
1) Has anyone been diagnosed with Small Cell Carcinoma in the bladder and if so, did you get your bladder removed? If so, I'd love to hear your experience with bladder removal so I can relay that back to my mom.

2) Does anyone know of any clinical trials or other treatments for Small Cell Carcinoma?

Thanks so much! I appreciate all of your help.

Welcome, @nlc512. I moved your message to this existing discussion:
- Small cell carcinoma of the bladder (SCCB): anyone else? https://connect.mayoclinic.org/discussion/small-cell-carcinoma-bladder-sccb/

I did this so you can read previous posts and connect easily with others who have experience with small cell carcinoma of the bladder, like @nvmoen @tattrigoo @samasama @jimmy2248 @sandielegal @m1985 @serenalux and @predictable. You can read more of their posts in this related discussion:
– Bladder Cancer/Small cell bladder cancer https://connect.mayoclinic.org/discussion/small-cell-bladder-cancer/

You're asking great questions.
@sue225 and @sepdvm both wrote fantastic posts about their husbands' experiences with bladder replacement options in these 2 discussions:
- My husband's radical cystectomy experience https://connect.mayoclinic.org/discussion/my-husbands-radical-cystectomy-experience/
- My husband's experience with neobladder surgery for bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/

I'm forever indebted to these 2 members for sharing their experiences to share with you.

To help navigate clinical studies available, you can call Mayo Clinic with your cancer-related clinical studies questions
- Phone: 855-776-0015 (toll-free)
- Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

NLC, what treatment options are being suggested for your mom?

I have a TURBT scheduled for this Tuesday. 1.5 cm tumor found by cystoscopy. Near one of the ureters. The urological oncologist has said that he may flood the bladder with Mitomycin after tumor removal depending on what he finds. So, the waiting game before surgery, the nervousness, and then more waiting and nervousness on the biopsy results.

I have a TURBT scheduled for this Tuesday. 1.5 cm tumor found by cystoscopy. Near one of the ureters. The urological oncologist has said that he may flood the bladder with Mitomycin after tumor removal depending on what he finds. So, the waiting game before surgery, the nervousness, and then more waiting and nervousness on the biopsy results.

Hi Richard, my husband had TURBT to remove 2.5cm tumor from his bladder in Aug 2021.

The surgery itself was not long (less than a hour), they flushed his bladder with the same chemo drug as you mentioned right after. You will stay in the post-op area for about 2 hours, after then the nurse will get the chemo fluid out through a catheter, you will be asked to sit on the toilet to pee at home for the first 8 hours and add bleach to the toilet bowl, soak it for a while before flushing. You should be drinking lots of water during the first 8 hours after you are discharged.

You will have burning sensation for about two days or less. They might give you some medication for that which makes your urine orange.
It is stressful waiting for the biopsy result, which determines whether the tumor is benign or malignant, and if malignant, it will tell you the grade and stage. We have been through all these, if you have questions, please feel free to reach out.
Wishing you the best of luck on Tuesday!

Jas